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Health Literacy: A Prescription to End Confusion B Commissioned Papers CONTENTS The Relationship Between Health Literacy and Medical Costs David H. Howard 256 Improving Chronic Disease Care for Populations with Limited Health Literacy Dean Schillinger 267 Outside the Clinician–Patient Relationship: A Call to Action for Health Literacy Barry D. Weiss 285
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Health Literacy: A Prescription to End Confusion The Relationship Between Health Literacy and Medical Costs David H. Howard, Ph.D. INTRODUCTION Past research has shown that individuals with low levels of health literacy are more likely to be hospitalized and have worse disease outcomes (Baker et al., 1998, 2002; Schillinger et al., 2002). The major obstacle to extending these results by examining the relationship between health literacy and spending is the lack of data containing measures of both. Some insight about the impact of health literacy on costs can be gleaned from studies that examine the impact of years of schooling on medical costs, but health literacy is a fundamentally different concept from educational attainment (Davis et al., 1994; Stedman and Kaestle, 1991). At least one study has examined the association between general literacy and costs (Weiss et al., 1994). It found no relationship, though the sample size was small (N = 402) and not representative of the overall U.S. population (over half the study subjects qualified for Medicaid because of disability). Furthermore, inpatient and outpatient costs were not analyzed separately and the analysis did not control for confounding patient characteristics. Another paper by the same author (Weiss) shows large differences in costs by grade reading level in a Medicaid population (Weiss, 1999), but descriptions of the methods and data are not available. This study examines the relationship between health literacy and costs using a unique dataset combining cost information from an administrative claims file and a health literacy measure from a beneficiary survey. Multivariate techniques are used to adjust for underlying differences in respondents’ characteristics. Data Description Health literacy data were collected as part of a survey of persons enrolling in a Prudential Medicare health maintenance organization between December of 1996 and August of 1997 in one of four locations: Cleveland, Ohio; Houston, Texas; South Florida (including Fort Lauderdale, Miami, and nearby areas); and Tampa, Florida. New Prudential Medicare members were contacted three months after enrollment, and those meeting the eligibility criterion were asked to complete an in-person survey. In order to be included in the study, members had to be comfortable speaking either English or Spanish, living in the community, and possess adequate visual and cognitive function. The survey included the Short Test of Functional
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Health Literacy: A Prescription to End Confusion Health Literacy in Adults (S-TOFHLA) (Parker et al., 1995), a series of questions designed to measure health literacy. A detailed description of the survey and data has been published elsewhere (Gazmararian et al., 1999). Prudential administrative claims databases were used to compute annual health expenditures from the date of enrollment for all eligible enrollees by site of service (inpatient, outpatient, emergency room, and pharmacy). The claims database includes costs for all medical services used by enrollees associated with insurance reimbursement. The cost for each service is the sum of Prudential’s reimbursement and the beneficiary’s out-of-pocket payment. Table B-1 presents evidence on how closely the study sample represents the U.S. population of health-care consumers. The first column of the table presents summary statistics for the 3,260 responders, the second for the 3,245 nonresponders, and the third for participants of comparable age in the household component of the 1997 Medical Expenditure Panel Survey (MEPS) (for a description see Cohen et al., 1996–1997). Differences between samples were assessed using one-way analysis of variance (ANOVA) tests by group for three-sample comparisons of continuous variables and chi-squared tests for two-sample comparisons of binary variables. ANOVA tests for differences in the cost variables were performed on the natural TABLE B-1 Representativeness of the Study Sample Prudential Responders Nonresponders MEPS 97 P-value Inpatient costs $5,321 $4,512 $2,276 <0.01 Outpatient costs $1,837 $1,547 $1,203 <0.01 ER costs $131 $115 $124 <0.01 Pharmacy costs $677 $655 $743 <0.01 Age 72.8±6.4 73.3±6.8 74.6±6.8 <0.01 Schooling 12 years 34% no data 31% 0.03 >12 years 31% no data 28% 0.03 Need help with ADLs 5% no data 9% <0.01 Need help with IADLs 31% no data 16% <0.01 N 3,260 3,245 3,833 NOTE: Age row reports mean ± standard deviation.
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Health Literacy: A Prescription to End Confusion logarithm of costs to make the variable conform to the normality assumption underlying the F-test. Compared to nonresponders and the MEPS sample, responders incurred higher inpatient, outpatient, emergency room, and pharmacy expenditures. There were also small differences in average age (0.5 years) and the proportion with more than 12 years of schooling. Compared to MEPS respondents, Prudential respondents were less likely to need assistance with at least one activity of daily living but more likely to need assistance with at least one instrumental activity of daily living. Differences in survey administration may account for some of these inconsistencies (Wiener et al., 1990). Spending differences between the Prudential population and the MEPS sample, which is nationally representative, may reflect the fact that study participants reside primarily in large urban areas, where reimbursement rates tend to be higher. South Florida, one of the locales from which respondents were drawn, is known to have the highest level of per beneficiary Medicare spending in the country (Center for Evaluative Clinical Sciences, 1998). The study population may also differ in health status. While Medicare managed care plans tend to enroll a healthier mix of beneficiaries compared to the traditional Medicare program (Hellinger and Wong, 2000), managed care plans that offer generous prescription drug coverage or require little in the way of cost-sharing may attract beneficiaries with chronic conditions. A final explanation for the cost differences is that MEPS fails to capture a large portion of spending for Medicare beneficiaries due to restrictive sampling criteria (Selden et al., 2001). Raw S-TOFLHA score were converted to a discreet categorical variable for purposes of analysis (Baker et al., 1999). Persons scoring 67 and above on the S-TOFHLA were classified as having “adequate” health literacy and those scoring 66 or below were classified as having “inadequate” health literacy. Previous studies have distinguished between a “marginal” health literacy group, with scores between 56 and 66, and an “inadequate” group, with scores 55 or below (Baker et al., 2000). This study combined data from the marginal and inadequate groups to increase statistical power, as no significant cost differences were found between these two groups in preliminary analyses. Table B-2 displays detailed summary statistics by health literacy level for the responders. Differences between groups were assessed using chisquared tests for binary variables and t-tests for continuous variables. Persons with inadequate health literacy had lower incomes and fewer years of schooling. More Caucasian subjects had adequate than inadequate health literacy, while more African Americans and Spanish-speaking Hispanics had inadequate health literacy. Physical and mental quality-of-life, as mea-
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Health Literacy: A Prescription to End Confusion TABLE B-2 Characteristics of the Study Sample Literacy Adequate Inadequate P-value Age 71.6±5.6 75.1±6.9 <0.01 Female 58% 57% n.s. Race White 84% 61% <0.01 Black 7% 22% <0.01 Hispanic, English speaking 2% 2% n.s. Hispanic, Spanish speaking 7% 14% <0.01 Other 1% 1% n.s. Income No response 14% 20% <0.01 <$10K 12% 29% <0.0 $10K–$25K 50% 42% <0.01 >$25K 24% 9% <0.01 Schooling <8 years 7% 36% <0.01 9–11 years 15% 25% <0.01 12 years 38% 25% <0.01 >12 years 40% 14% <0.01 Smoking Never 38% 55% <0.01 Former 49% 43% <0.01 Current 13% 12% n.s. Drinking None 59% 72% <0.01 Light to Moderate 37% 26% <0.01 Heavy 4% 2% <0.01 Physical health SF-12 score 46.4±10.7 42.6±11.8 <0.01 Mental health SF-12 score 55.6±8.0 53.1±10.4 <0.01 Chronic conditions High blood pressure 45% 50% 0.01 Arthritis 50% 58% <0.01 Depression 6% 5% n.s. N 2,094 1,166 NOTE: Age and SF-12 score rows report mean ± standard deviation; n.s. = not significant. sured by SF-12 scores (Ware et al., 1996) and chronic condition indicators, were higher in those with inadequate health literacy, indicating worse health status overall. Somewhat surprisingly, persons with inadequate health literacy are less likely to smoke or have smoked previously and less likely to consume alcohol.
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Health Literacy: A Prescription to End Confusion Statistical Analysis Costs by site of service were compared between the adequate and inadequate health literacy groups using a two-part regression model of medical spending. The two-part model is the standard statistical framework in empirical health economics for measuring the impact an individual characteristic on medical costs (Diehr et al., 1999). It is designed to account for the unique distribution of medical spending found in most samples; a sizeable minority of individuals do not use medical care, many use small amounts, and a few individuals incur substantial medical bills that account for a large percentage of aggregate spending. Because of the highly skewed distribution and presence of a large number of “0” values, standard statistical methods that assume the dependent variable is normally distributed yield inaccurate predictions of costs (Duan et al., 1983). The two-part model attempts to more accurately mimic the empirical distribution of medical spending by splitting the distribution into two parts and allowing the impact of independent variables, such as health literacy, on the probability of using medical care to be independent of their impact on the costs of medical care for those who use it. The first stage of the model measures the probability of using medical care as a function of individual characteristics. Typically, logitistic or probit regression is used, where the dependent variable equals one if costs are strictly positive and zero otherwise. Probit (or probability unit) regression was used in this case. Health literacy was included as an independent variable, along with controls for age, sex, race, income, schooling, smoking, and alcohol consumption. The second stage of the model estimates the relationship between independent variables and costs among those who use medical care. Parameters are estimated via least squares regression, where the dependent variable is the logarithm of costs and the independent variables are the same as in the first stage but the sample includes only individuals who received care (i.e., those with strictly positive values for the relevant cost category). Coefficient estimates for the two-part model are difficult to interpret in isolation, since the dependent variable of the second stage is in log, rather than constant, dollars, and it is customary to state results in terms of predicted spending levels. These are constructed by computing predicted probabilities from the first stage and then multiplying these predicted probabilities by the exponentiated second-stage predicted values and a “smearing factor” (Duan, 1983), which is needed to transform logged dollars back to constant dollars, and averaging the predicted spending levels over the entire sample. Transforming log to constant dollars via this method may produce misleading results if the variance of spending in the upper part of the distribution differs from the variance in the lower part (Manning, 1998).
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Health Literacy: A Prescription to End Confusion To address this issue, costs were also analyzed using the modified two-part model proposed by Mullahy (1998). In this model, the first stage is the same as in the standard two-part model, but the second stage is a nonlinear equation where cost equals the exponentiated sum of dependent variables and coefficients. This modified two-part model produced estimates within 5 percent of the predicted values from the standard two-part model. Therefore, only the results from the standard two-part model are presented below. Two values are used to summarize the effect of a binary independent variable on spending. The first is the average predicted spending level with the variable indicating inadequate health literacy set equal to zero for every respondent; the second is the average predicted spending level with the health literacy variable set equal to one. Computed predicted values in this manner nets out the impact of observable individual characteristics, such as age, on spending. Confidence intervals for predicted values were computed via simulation; the first- and second-stage coefficients were drawn from their respective multivariate normal distributions and predicted values were computed following the steps outlined above. Repeating this routine 1,000 times produced distributions of predicted values, and the lower and upper bounds of the confidence intervals were set equal to the 2.5th percentiles and the 97.5th percentiles of the distributions, respectively. Two models were estimated. The first (or basic) model includes controls for sex, age, income, schooling, smoking, and alcohol consumption. The second includes additional controls for physical and mental status (from the SF-12) and chronic conditions (high blood pressure, arthritis, and depression). This model does not include the 66 observations for which no physical or mental health SF-12 scores were reported, for a sample of 3,192 observations (= 3,260–66). Results Results from the two-part model are displayed in Table B-3. Inpatient costs are the largest component of total medical spending. Predicted inpatient spending for persons with inadequate health literacy is $993 higher than that of persons with adequate health literacy (difference in raw means: $1,859). Controlling for health status, predicted inpatient spending for persons with inadequate health literacy is about $450 higher than that of persons with adequate health literacy. The confidence intervals for inpatient spending from the basic model overlap slightly, while the confidence intervals for inpatient spending from the model that includes controls for health status display a greater degree of overlap. Examining separately the results from each stage of the two-part model helps illuminate the reasons
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Health Literacy: A Prescription to End Confusion TABLE B-3 Predicted Health-Care Spending Health Literacy Cost Category Adequate Inadequate Difference Basic Model Inpatient $5,093 [$4,593 – $5,656] $6,086 [$5,424 – $6,806] $993 Outpatient $1,910 [$1,816 – $2,017] $1,795 [$1,681 – $1,914] ($115) Emergency room $110 [$97 – $124] $174 [$154 – $196] $64 Pharmacy $700 [664 – $739] $686 [$629 – $741] ($14) Model with Controls for Health Status Inpatient $5,352 [$4,832 – $5,945] $5,794 [$5,042 – $6,573] $442 Outpatient $1,989 [$1,881 – $2,118] $1,709 [$1,589 – $1,854] ($280) Emergency room $115 [$102 – $130] $166 [$144 – $193] $51 Pharmacy $778 [$729 – $832] $695 [$633 – $765] ($83) NOTE: 95% confidence intervals are in brackets. Difference column displays the mean cost in the Inadequate column subtracted from the mean cost in the Adequate column. Negative values are in parentheses. for spending differences. According to the first part of the two-part model for inpatient spending (results not shown; complete regression results are available from the author upon request), persons with inadequate health literacy are more likely to use inpatient services (p < 0.05), but, among those who used inpatient care, spending did not differ by health literacy status. In contrast to the results for inpatient spending, the predicted outpatient spending level from the basic model for persons with adequate health literacy is higher than the predicted value for persons with inadequate health literacy. Predicted spending on emergency room care is lower for persons with adequate health literacy, while the predicted values for pharmacy spending from the basic model are comparable. These results are shown in terms of total spending by the study sample in Table B-4. The first column shows predicted total spending under the assumption that the proportion of individuals with adequate health literacy is 64 percent, the actual proportion in the study sample. The second column shows predicted total spending under the assumption that the proportion of individuals with adequate health literacy is 100 percent, representing the maximum attainable level of health literacy in the population.
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Health Literacy: A Prescription to End Confusion TABLE B-4 In-Sample Prediction of Health Literacy and Total Costs Percent with Adequate Literacy 64% (actual) 100% Difference Inpatient 17,877,000 $16,616,000 $1,261,000 Outpatient 6,079,400 $6,227,300 ($147,900) Emergency room 438,480 $359,910 $78,570 Pharmacy $2,263,400 $2,277,700 ($14,300) NOTE: Difference column displays the mean cost in the inadequate column subtracted from the mean cost in the adequate column. Negative values are in parentheses. Discussion When assessing the causality of the results presented in Tables B-3 and B-4, it is important know whether health literacy, like ethnicity, is a constant, fixed characteristic of individuals or, like income, is associated with changes in health. Health literacy declines sharply with age in the study cohort (Baker et al., 2000), suggesting the latter. If so, then the relationship between health and health literacy is bidirectional; health literacy affects health and vice versa. To take an extreme example, an individual who experiences a severe stroke may lose the ability to read. It would be incorrect in such a case to attribute the costs associated with post-stroke care to illiteracy, since the stroke caused illiteracy and not the other way around. Controlling for health status, as is done in the extended model, removes the effect of health on health literacy but also removes the effect of health literacy on disease incidence, leading to estimates of the impact of health literacy on spending that are systematically lower than the true effect. Declines in health literacy by age are unrelated to the onset of chronic conditions (Baker et al., 2000), suggesting that the bias due to reverse causality is not large. Nevertheless, future studies could address this issue by taking two or more measurements of health literacy from the same respondent at different points in time. Another caveat to this study is that though the analysis included fairly extensive controls for individual characteristics, including income, education, smoking, and alcohol consumption, there still may be unobserved individual characteristics correlated with both health literacy and spending that confound the results. For example, if individuals with low health literacy are also distrustful of the medical care system and are reluctant to seek medical attention, then the results will understate the impact of health literacy on costs.
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Health Literacy: A Prescription to End Confusion Some insight on the validity of these results may be gained by examining differences in spending by site of service. Studies have shown that patients with low levels of health literacy receive fewer preventive services (Lindau et al., 2002; Scott et al., 2002), frequently fail to follow medication instructions (Andrus and Roth, 2002), and have worse health outcomes (Schillinger et al., 2002). The results of this study are consistent with these findings; individuals with inadequate health literacy make greater use of services designed to treat complications and advanced cases of disease, as indicated by higher spending for inpatient and emergency room care. Simultaneously, they use fewer services designed to manage disease, as evidenced by lower spending for outpatient care. In conclusion, these results lend support to the hypothesis that individuals with low levels of health literacy incur higher medical costs, but, because of the limitations discussed above, no definitive conclusions can be drawn from the analysis. Results were sensitive to the inclusion of controls for health status, and the confidence intervals around predicted inpatient spending from the basic model overlapped by a small amount. Although it is impossible to prove causality, future studies should take advantage of statistical methods, such as propensity score estimators (Coyte et al., 2000; Rubin, 1997), designed to estimate treatment effects efficiently and the diagnostic information contained on claims to determine if expenditures are higher for persons with the conditions thought to be most responsive to patient knowledge. Data with repeated measurements of health literacy over time would also be helpful, especially for assessing the responsiveness of health literacy to health. For the time being, researchers should be cautious in terms of justifying interventions to improve health literacy based on potential cost savings. REFERENCES Andrus MR, Roth MT. 2002. Health literacy: A review. Pharmacotherapy. 22(3): 282–302. Baker DW, Parker RM, Williams MV, Clark WS. 1998. Health literacy and the risk of hospital admission. Journal of General Internal Medicine. 13(12): 791–798. Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. 1999. Development of a brief test to measure functional health literacy. Patient Education and Counseling. 38: 33–42. Baker DW, Gazmararian JA, Sudano J, Patterson M. 2000. The association between age and health literacy among elderly persons. Journals of Gerontology Series B—Psychological Sciences & Social Sciences. 55B(6): S368–S374. Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, Ren J, Peel J. 2002. Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. American Journal of Public Health. 92(8): 1278–1283. Center for Evaluative Clinical Sciences. 1998. The Dartmouth Atlas of Health Care. Chicago, IL: American Hospital Publishing.
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Health Literacy: A Prescription to End Confusion Cohen JW, Monheit AC, Beauregard KM, Cohen SB, Lefkowitz DC, Potter DE, Sommers JP, Taylor AK, Arnett RH 3rd. 1996–1997. The Medical Expenditure Panel Survey: A national health information resource. Inquiry. 33(4): 373–389. Coyte PC, Young W, Croxford R. 2000. Costs and outcomes associated with alternative discharge strategies following joint replacement surgery: Analysis of an observational study using a propensity score. Journal of Health Economics. 19(6): 907–929. Davis TC, Mayeaux EJ, Fredrickson D, Bocchini JA Jr, Jackson RH, Murphy PW. 1994. Reading ability of parents compared with reading level of pediatric patient education materials. Pediatrics. 93(3): 460–468. Diehr P, Yanez D, Ash A, Hornbrook M, Lin DY. 1999. Methods for analyzing health care utilization and costs. Annual Review of Public Health. 20: 125–144. Duan N. 1983. Smearing estimate: A nonparametric retransformation method. Journal of the American Statistical Association. 78: 605–610. Duan N, Manning WG Jr, Morris CN, Newhouse JP. 1983. A comparison of alternative models for the demand for medical care. Journal of Business and Economic Statistics. 1: 115–126. Gazmararian JA, Baker DW, Williams MV, Parker RM, Scott TL, Green DC, Fehrenbach SN, Ren J, Koplan JP. 1999. Health literacy among Medicare enrollees in a managed care organization. Journal of the American Medical Association. 281(6): 545–551. Hellinger FJ, Wong HS. 2000. Selection bias in HMOs: A review of the evidence. Medical Care Research and Review. 57(4): 405–439. Lindau ST, Tomori C, Lyons T, Langseth L, Bennett CL, Garcia P. 2002. The association of health literacy with cervical cancer prevention knowledge and health behaviors in a multiethnic cohort of women. American Journal of Obstetrics & Gynecology. 186(5): 938–943. Manning WG. 1998. Much ado about two: Reconsidering retransformation and the two-part model in health economics. Journal of Health Economics. 48: 375–391. Mullahy J. 1998. Much ado about two: Reconsidering retransformation and the two-part model in health econometrics. Journal of Health Economics. 17(3): 247–281. Parker RM, Baker DW, Williams MV, Nurss JR. 1995. The Test of Functional Health Literacy in Adults: A new instrument for measuring patients’ literacy skills. Journal of General Internal Medicine. 10(10): 537–541. Rubin DB. 1997. Estimating causal effects from large data sets using propensity scores. Annals of Internal Medicine. 127(8 Pt 2): 757–763. Schillinger D, Grumbach K, Piette J, Wang F, Osmond D, Daher C, Palacios J, Sullivan GAD, Bindman AB. 2002. Association of health literacy with diabetes outcomes. Journal of the American Medical Association. 288(4): 475–482. Scott TL, Gazmararian JA, Williams MV, Baker DW. 2002. Health literacy and preventive health care use among Medicare enrollees in a managed care organization. Medical Care. 40(5): 395–404. Selden TM, Levit KR, Cohen JW, Zuvekas SH, Moeller JF, McKusick D, Arnett RH 3rd. 2001. Reconciling medical expenditure estimates from the MEPS and the NHA, 1996. Health Care Financing Review. 23(1): 161–178. Stedman L, Kaestle C. 1991. Literacy and Reading Performance in the United States from 1880 to Present. New Haven, CT: Yale University Press. Pp. 75–128. Ware J Jr, Kosinski M, Keller SD. 1996. A 12-Item Short-Form Health Survey: Construction of scales and preliminary tests of reliability and validity. Medical Care. 34(3): 220–233. Weiss BD. 1999. How common is low literacy? In: 20 Common Problems in Primary Care. Weiss BD, Editor. New York: McGraw-Hill. Pp. 468–481.
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Health Literacy: A Prescription to End Confusion ship between literacy and costs remained strong even after a multivariable analysis that accounted for education, gender, ethnic group, and preferred language. Thus, to the extent that interventions to improve health literacy (Table B-5) can reduce health-care costs, such interventions can potentially result in substantial cost savings for Medicaid programs. Tricare The Tricare program provides health insurance benefits for the nation’s military personnel (active- and non-active-duty) and their dependents. The program covers direct medical care, prescriptions, dental care, and a variety of other health-related benefits. Tricare is an expensive program. Spending by the federal government for direct medical and administrative costs totaled $8.3 billion in 1998 for some 4 million Tricare enrollees (Stoloff et al., 2000). As noted earlier, many military recruits have limited literacy skills. Given the association between limited literacy and higher health-care costs, and given the cost of the Tricare system, significant cost savings might accrue to the U.S. military if the health literacy skills of the military recruits were improved. Thus, the military is an entity with large potential gain from improvement in its members’ health literacy. As mentioned, the military currently engages in literacy-skill enhancement for its recruits to enable them to function adequately in the roles as soldiers. Incorporating health knowledge within literacy training (Table B-5) might provide further benefit by reducing excess costs related to limited health literacy. Employers Business leaders have long recognized the need for literacy enhancement in the workforce, as workers’ limited literacy skills often interfere with productivity and safety (Rockefeller Foundation Conference Proceedings, 1989). This concern is of particular importance for businesses that employ large numbers of routine service providers and production workers, because these groups have an over-representation of undereducated individuals (Reich, 1992). Some large employers already offer literacy training to their employees to address concerns about workplace literacy (Academy of Human Resource Development, 2000; Askov and Van Horn, 1993; National Institute for Literacy, 1994). Businesses should also have an interest in health literacy because of its relationship to health-care costs. Government agencies have reported that nearly two-thirds of Americans under age 65 obtain health insurance through their workplace (Monheit and Vistnes, 1997), with more than 150
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Health Literacy: A Prescription to End Confusion million workers and dependents in the United States, and an additional 5 million retirees, receiving job-based health insurance benefits (Gabel et al., 2000). On average, health benefits currently cost employers about $1.29 per hour per employee (U.S. Department of Labor, 2002). The result of these costs, based on recent data from the Agency for Healthcare Research and Quality (AHRQ), is that each year private employers in the United States pay in the range of $350 billion to cover the cost of hospitalizations and physicians’ services for their employees and families (Table B-6) (AHRQ, 2000). Public employers, including federal, state, and local governments, pay approximately $60 billion dollars per year. These costs rise annually—an 8 percent increase in 2000 and an 11 percent increase in 2001—with similar increases anticipated in the future (Mercer, 2003). Health insurance premiums paid by employers increase at a faster rate than wages or overall inflation (Gabel et al., 2001). Indeed, the Health Care Financing Administration has estimated that by 2008, healthcare spending in the United States will reach $2.2 trillion (CMS, 2003). To the extent that improving literacy skills will reduce health-care costs, employers would benefit substantially from initiatives that improve worker literacy. This is especially true for employers with a workforce that includes large numbers of routine service and production workers, as these groups have high rates of limited literacy. Partners in such initiatives could TABLE B-6 National Totals for Enrollees and Cost of Hospitalization and Physician Service Health Plans for the Private Sector, United States, 2000 Enrollee Category Total (in thousands of persons) Total Enrollees 71,253 Active enrollees 64,284 Enrollees through COBRA 2,766 Retired enrollees 4,203 Costs Total (in millions of dollars) Total Costs 349,612 Employer contribution single coverage 69,066 Employer contribution family coverage 191,916 Employee contribution single coverage 18,251 Employee contribution family coverage 70,379 SOURCE: Agency for Healthcare Research and Quality, Center for Cost and Financing Studies. 2000 Medical Expenditure Panel Survey—Insurance Component (http://meps.ahrq.gov/MEPSDATA/ic/2000/Tables_IV/TableIVA1.htm).
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Health Literacy: A Prescription to End Confusion include not only employers, but also community-based literacy programs and local governments seeking to attract employers that would be drawn to communities with a more literate workforce. An additional approach to improving workforce literacy, including health literacy, could focus on science education in secondary schools and universities, where most students currently are taught basic science facts, rather than applied health sciences—and many students study little or no science at all. Indeed, data from the National Center for Education Statistics indicate that only 75 percent of U.S. high school students take more than one science course. While biology is the most popular science course offered in high school (i.e., most students select biology as their one science course), only about 1 in 6 takes an advanced course in biology (National Center for Education Statistics, 2001). The result is that many, if not most, students, even some destined for a career in the health sciences, graduate from high schools without a substantive understanding of the anatomy, physiology, and etiology of common diseases like atherosclerosis, diabetes, and cancer. Incorporating an applied “health literacy approach” into science education in schools and universities could have a major benefit for improving the health literacy of the nation’s workforce and for reducing health-care expenditures for employers (Table B-5). Advocacy Organizations There are many national-level organizations with missions dedicated to improving opportunities and quality of life for their constituents. Of note, some of these organizations advocate on behalf of the groups with the highest rates of limited literacy—the elderly, Hispanics, and African Americans—and these organizations could implement programs to improve their constituents’ health literacy (Table B-5). Although not discussed here, there are also advocacy groups on both local and national levels that represent the other high-risk groups, such as other ethnic minority groups, immigrants, the homeless, the poor, and prisoners. Advocates for the Elderly The most well known, and perhaps the most important, senior citizens’ advocacy group is the American Association of Retired Persons (now known only by the acronym AARP)—which represents over 35 million older Americans (AARP, 2002). In addition to general advocacy on behalf of the nation’s elderly, AARP places particular emphasis on health and the cost of health care for senior citizens. Given the very high rate of limited literacy among older individuals, and relationship of those limited literacy skills to health status, health-care
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Health Literacy: A Prescription to End Confusion costs, employment opportunities, and quality of life, a focus on literacy—including health literacy—would advance AARP’s mission and improve quality of life for its constituents. Other senior citizens’ advocacy groups share similar goals. Advocates for Hispanics There are many advocacy organizations for Hispanics, but two stand out as particularly respected and influential: the National Council of La Raza and the Mexican American Legal Defense and Educational Fund. In addition, the National Hispanic Medical Association has particular interest in health-related issues, which could include health literacy. National Council of La Raza The National Council of La Raza is a private, nonprofit organization established in 1968. It has 270 formal affiliates in 40 states, and a much broader network of 20,000 groups and individuals nationwide. Its mission is to “improve life opportunities for Hispanic Americans” (National Council of La Raza, 2003). Life opportunities are diminished when individuals have limited literacy skills, and the literacy skills of Hispanics are currently the lowest of any major ethnic group in the United States (Table B-7). Enhancing literacy skills, including health literacy skills, as an area of emphasis for the National Council of La Raza and similar organizations has the potential to improve economic opportunities and health care for Hispanic Americans. Mexican American Legal Defense and Educational Fund The Mexican American Legal Defense and Educational Fund is a national nonprofit organization whose mission includes assuring that “there are no obstacles preventing [the Latino] community from realizing its dreams…” (Mexican American Legal Defense and Educational Fund, 2003). Limited literacy is one such obstacle, and the Mexican American Legal Defense and Educational Fund could participate in efforts to enhance literacy and health literacy skills of Hispanics. National Hispanic Medical Association The National Hispanic Medical Association is an organization that represents Hispanic medical providers. The organization expresses a commitment to providing policy makers and health-care providers with expert medical information, and to supporting and strengthening delivery of health
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Health Literacy: A Prescription to End Confusion TABLE B-7 Percentage of Adult Population Groups with Literacy Skills at NALS Levels 1 or 2 Percent Group Level 1 Level 2 All NALS Respondents 22 28 Age 16–54 years 15 28 55–64 years 28 33 65 years and older 49 32 Highest Education Level Completed 0–8 years 77 19 9–12 years (no high school graduation) 44 37 High school diploma/GED (no college study) 18 37 Racial/Ethnic Group White 15 26 American Indian/Alaska Native 26 38 Asian Pacific Islander 35 25 Black 41 36 Hispanic (all groups) 52 26 Immigrants to U.S. (various countries of origin) 0–8 years of education prior to arrival in U.S. 60 31 9 + years of education prior to arrival in U.S. 44 27 SOURCE: Unadjusted averages of prose and document literacy scores on the NALS as reported on Tables 1.1A, 1.1B, 1.2A, and 1.2B in Kirsch I, Jungeblut A, Jenkins L, Kolstad A. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey. Washington, DC: National Center for Education Statistics, U.S. Department of Education; September, 1993, and on Table B3.13 in U.S. Department of Education. National Center for Education Statistics. English Literacy and Language Minorities in the United States, NCES 2001–464, by Greenberg E, Macías RF, Rhodes D, Chan T. Washington, DC: 2001. services to Hispanic communities across the nation (National Hispanic Medical Association, 1997). Aiding in the improvement of health literacy for Hispanics would go hand in hand with these goals, and it would seem logical for the National Hispanic Medical Association to participate in health literacy efforts. Advocates for African-Americans African-Americans are also represented by a number of advocacy organizations. Two of the most respected organizations are the National Association for the Advancement of Colored People (NAACP) and the National Urban League. The National Medical Association, the organization that
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Health Literacy: A Prescription to End Confusion represents African-American physicians, also has a specific interest in the health status of African-American citizens. NAACP NAACP is the nation’s oldest and largest civil rights organization. NAACP has a specific health division, with goals that include “developing national health advocacy and education initiatives that promote equity in health status,” “sponsoring collaborative initiatives with other national and local health groups,” and “expanding outreach on health advocacy and awareness in communications” (NAACP, 2003). Assuring adequate health literacy as a component of initiatives meets all of those goals, and NAACP may thus be an effective advocate for enhancing health literacy among African Americans. National Urban League The National Urban League has affiliates in more than 100 cities in 24 states. While the organization’s goal is broadly aimed at enabling “African Americans to secure economic self-reliance, parity and power and civil rights,” its mission also includes a specific goal of “ensuring that our children are well educated” (National Urban League, 2002). Efforts to improve literacy in general, and health literacy in particular, would fall within the mission of the National Urban League. National Medical Association The National Medical Association represents the interests of more than 25,000 African-American physician and their patients. One of the organization’s key missions is “to improve the status of health and quality and availability of health care to African-American and underserved populations” (National Medical Association, 2003). This mission would be enhanced by efforts to improve health literacy. Other Organizations and Systems There are many other organizations and systems that provide services to groups with high rates of limited literacy. Among these are prison systems and social service agencies that work with undereducated individuals. Professional organizations that represent health-care providers (in addition to the National Medical Association and National Hispanic Medical Association) also have a role to play in improving health literacy (Table B-5).
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Health Literacy: A Prescription to End Confusion Prison Systems Inmates in most prisons already have access to literacy improvement programs. Given the large and growing size of the U.S. prison population, however, and the costs associated with providing health care to prisoners, incorporating health literacy content might enhance current literacy improvement programs. Social Service Agencies Social service agencies in virtually all U.S. communities interact with low-literate individuals every day, because clientele of these agencies include large numbers of unemployed persons with limited education. Some of these agencies, particularly adult education programs, focus on literacy enhancement as a core mission through adult basic education, GED programs, and “English as a Second Language” programs. The majority of individuals with limited literacy, however, do not enter such education programs. Rather their interaction with social service agencies is often through county and state public assistance programs, unemployment agencies, childcare programs, and others. These social service agencies spend large sums of money providing services to their clientele, and those sums might be reduced if clientele had better literacy skills that permitted easier entry into the workforce. To the extent that clientele of these agencies have chronic health problems—and many do—costs might further be reduced if clientele had better health literacy. Public assistance, unemployment, and childcare agencies could link with local adult education programs, or with national literacy programs such as ProLiteracy America (Proliteracy Worldwide, 2002), to facilitate easy referral into literacy training programs. In fact, literacy training programs could be located on site with, or in close geographic proximity to, a variety of social service agencies, including medical clinics whose clients might benefit from literacy enhancement. Such partnerships, some emphasizing health literacy, are currently in place in a number of communities (Community Health Partners, 2003; El Paso Community College/ Community Education Program, 2001). More such partnerships should be encouraged. Professional Associations Finally, professional associations representing health-care providers have an interest in assuring and improving health and health care for individual patients. With evidence showing that limited literacy skills are associated with poorer health status, all professional associations representing
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Health Literacy: A Prescription to End Confusion health-care providers should have a de facto interest in improving health literacy. Some professional associations, such as the American Medical Association, have already produced educational materials to enhance health providers’ understanding of the health literacy problem and give them suggestions for how to more effectively communicate with patients (Weiss, 2003). The materials include educational monographs and videotapes, train-the-trainer programs, and outreach efforts to local medical societies. Other professional organizations, such as the American Academy of Neurology, the Virginia Medical Society, the Iowa Medical Society, and the Georgia Academy of Family Physicians have also developed programs, or are planning to do so. Additional efforts from professional associations could include lobbying efforts aimed at securing support for health literacy content in adult basic education programs. Finally, professional organizations could improve the public’s health literacy by working with school systems to develop and implement health education curricula for use in elementary and secondary schools. CONCLUSION The unique vocabulary and concepts of medicine make it difficult for many individuals to fully understand health information provided to them by clinicians. This lack of understanding translates into poor health literacy—i.e., a limited ability to read, understand, and use health information to make effective health-care decisions and follow recommendations for treatment. While limited health literacy occurs in all segments of society, it is a particular problem for individuals with limited reading skills (i.e., limited general literacy). Limited literacy is more prevalent in certain groups. These groups include the elderly, racial and ethnic minorities, persons with limited education, immigrants, prisoners, the poor and homeless, and military recruits. In some of these groups, such as the elderly, certain ethnic minorities, and persons who did not complete school, the prevalence of limited literacy exceeds 80–90 percent. Persons with limited general and health literacy, on average, have poorer health knowledge, poorer health status, and higher health-care costs than do persons with higher-level literacy skills. The relationship between limited literacy and poorer health and higher costs is strong and independent of other socioeconomic factors. Based on results of the NALS, about half of U.S. adults have literacy skills that are inadequate to meet the demands of today’s health system. Health-care systems could address this problem through processes and poli-
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Health Literacy: A Prescription to End Confusion cies that enhance employee awareness of patients’ health literacy skills, and by delivering information in ways that patients can understand. A variety of public and private entities have a stake in the health literacy problem. These include health insurers, employers, and advocacy groups. Insurers have a stake in the problem because of the high cost of health care for persons with limited literacy. For example, because limited literacy skills are so common among the elderly, most of Medicare’s $240 billion annual budget goes to providing care for persons with limited literacy. Employers, especially those that employ large numbers of undereducated service and production workers, also have a stake in health literacy. Employers pay the high cost of their employee’s health insurance benefits, and their businesses lose productivity due to higher rates of illness among employees with limited literacy. REFERENCES AARP. 2002. AARP Facts. [Online]. Available: http://www.aarp.org/what_is.html [accessed: August, 2003]. Academy of Human Resource Development. 2000. Workforce Development. Symposium 37 [concurrent Symposium Session at AHRD Annual Conference, March 8–12, 2000]. Raleigh-Durham, NC: Academy of Human Resource Development. AHRQ (Agency for Healthcare Research and Quality, Center for Cost and Financing Studies). 2000. Medical Expenditure Panel Survey—Insurance Component. [Online]. Available: http://meps.ahrq.gov/MEPSDATA/ic/2000/Tables_IV/TableIVA1.htm [accessed August, 2003]. Askov EN, Van Horn B. 1993. Adult educators and workplace literacy: Designing customized basic skills instruction. Adult Basic Education. 3(2): 115–125. CMS (Centers for Medicare and Medicaid Services). 2000. Medicaid Eligables—Fiscal Year 2000 by Maintenance Assistance Status and Basis of Eligability. [Online]. Available: http://www.cms.hhs.gov/medicaid/msis/00total.pdf [accessed: August, 2003]. CMS. 2002. Medicare Program Spending. [Online]. Available: http://www.cms.hhs.gov/charts/series/sec3-a.ppt [accessed: August, 2003]. CMS. 2003. Health Accounts: Estimates. [Online]. Available: http://hcfa.gov/stats/NHE-proj/[accessed: August, 2003]. Community Health Partners. 2003. A Partnership for Health. [Online]. Available: http://chphealth.org/ [accessed: August, 2003]. El Paso Community College/Community Education Program. 2001. The El Paso Collaborative Health Literacy Curriculum. [Online]. Available: http://www.worlded.org/us/health/docs/elpaso/index.htm [accessed: August, 2003]. Gabel J, Levitt L, Pickreign J, Whitmore H, Holve E, Hawkins S, Miller N. 2000. Job-based health insurance in 2000: Premiums rise sharply while coverage grows. Health Affairs. 19(5): 144–151. Gabel J, Levitt L, Pickreign J, Whitmore H, Holve E, Rowland D, Dhont K, Hawkins S. 2001. Job-based health insurance in 2001: Inflation hits double digits, managed care retreats. Health Affairs. 20(5): 180–186.
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